Another week in 5th gear, buckle up

Post RDD - 

- Last day of Feb, b/c rarest day

- What did we do?

   - Raised $25k!

   - Newsletter went out!  Read and subscribe please https://twitter.com/cureSYNGAP1/status/1498256918371917824

   - Jess and Ray represented the Global Team at PWC/Edinburgh https://twitter.com/Cdnchick74/status/1498275297011056644

   - Jansen and Kimberly were shared, and that is a win for all of us.

       - https://variantyx.com/2022/02/25/jansens-story/

       - https://www.raredisease.org.uk/rduk-news/our-syngap1-story/ 

    - Announced #CouldItBeSyngap1 300+ already https://www.syngapresearchfund.org/post/syngap-research-fund-deploys-coulditbesyngap1-screening-tool-in-partnership-with-probably-genetic 

   - Webinar madness!

      - Two down

      - https://www.syngapresearchfund.org/webinars/the-use-of-milk-exosomes-to-increase-the-expression-of-syngap1-expression-in-syngap1-mice 

      - https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program -> https://syngap1.rare-x.org 

    - Two to go

      - Saturday: https://www.syngapresearchfund.org/webinars/estrategias-para-quitar-el-panal 

      - Thursday March 10th! https://www.syngapresearchfund.org/webinars/syngap1-service-dogs -> syngap.fund/julian -> https://secure.givelively.org/donate/syngap-research-fund-incorporated/service-dog-for-julian

    - SEVEN (7) New families this week

      - Six welcomed today in post https://www.facebook.com/groups/376862123195518/posts/939459816935743

      - One not on FB, but reached out after finding us… via this podcast!  Yeah.

 

That’s right, there is a work outside of Facebook, we are on Twitter and LinkedIn and Tiktok and Youtube too!

- Follow us everywhere with @cureSYNGAP1 

- We are doing a #followfriday on Twitter, so get on that, and meet some families and share your story… you never know where those go.  https://twitter.com/cureSYNGAP1/status/1499751768435175429?s=20&t=CcoXMTECIG6MZVzRo-IXqg 

- And it’s good for studies. I could only talk about people who were in the public domain here: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant

- Happy Birthday Kyle! syngap.fund/kyle Follow this channel: https://www.youtube.com/c/KelliKyle  

 

Thank you to SAB and CAB

    - We have stellar advisors, check them out: https://www.syngapresearchfund.org/home/our-team/sab and https://www.syngapresearchfund.org/home/our-team/team-clinical-advisory-board

    - They are working hard looking at some of the seven grant proposal we received!  It’s going to be a great investment in the future of our loved ones…

 

Sprint4Syngap!

- 2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!

- Sign up now: https://syngap.fund/sprint2022 

- Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/ 

 

What else?

- ORCA, thank you Kali, we have one person left and then we are locked and loaded for the next phase of that important project.

    - Great meeting with Overcome and partnering on Canadian grants.

    - One family, older, needed a neuro and we got them hooked up in a day.  Love it.

    - One more survey, if you can for our friends at CNF: https://syngap.fund/cnf22 

 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast 

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 

Episode 50 of #Syngap10 - March 5, 2022

#s10e50 #sprint4syngap #CouldItBeSYNGAP1 #probablyGenetic #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology